Monthly Archives: August 2012

Last Thursday I had my first tissue expander fill since having the left expander inserted on July 30. It was AWESOME–simple joys, right? I was so excited and anxious that I told myself I was going to let Dr. Festekjian do the fill without numbing me up. Of course I reneged on this decision, since I am a baby when it comes to pain and just the sight of the syringe and needle scared me into the numbing cream.

The numbing cream only delayed the process by a few minutes so it was totally worth it; I could barely feel the needle go in. Dr. Festekjian filled up the left side with 75 ccs of saline. We are going to let the left tissue expander “catch up” to the right tissue expander before we resume fills on that side. Right now my left side is at 325 ccs and my right is at 550 ccs. Each tissue expander can accommodate 750 ccs of saline. I anticipate I’ll need about nine more fills (at 50 ccs each) until I reach the maximum capacity.

On Sunday morning, Bryce and I woke up bright and early for the Making Strides Against Breast Cancer 5K walk in Santa Monica. I stayed up late the night before preparing my talking points for the survivor’s speech (or in my case, previvor). Bryce and I both wore Demand Media team t-shirts for the event and pink sunglasses; he looked very sexy in his pair, I must say.

Team Demand Media–I’m so proud to work with these people!

The event was small (compared to the 3-Day walks I’ve done in the past) but very successful and well-organized. There were at least 100 people there, and the sponsors included Demand Media (whoot whoot represent!), Equinox gym, and Go Country 105—my favorite radio station!

My “previvor” speech came after the address by an American Cancer Society rep. Since it was rather toasty outside, I tried to stay concise and upbeat. I ended up ditching my page of talking points as soon as I got up on stage. I mean, who am I kidding? This is MY story—I know it by heart!

I talked about my mom’s multiple cancer diagnoses and how I reacted to each one. In terms of her second diagnosis, I mentioned how angry and frustrated I felt and how many questions I had, and that those questions were all answered when we found out about the BRCA mutation. Then of course I talked about my own decision to have a prophylactic mastectomy, and though I’m fortunate to have that option, hopefully research will make it possible for my future children to have another more “civilized” option. I really wanted to connect a story about breast cancer to the walkers and their fundraising efforts, to let them know that the money they raised was going to help someone in a tangible way.

I walked in honor of my mom and my cousin Robbie.

After my speech, the walk started. We marched around a local park for about an hour; apparently four laps around said park is equivalent to a 5K. Once everyone was back from the walk, Kate (the Demand Media employee who helped plan the event) announced that we’d raised over $18,000! I was very impressed.

Kate did a stellar job organizing the event. It must have been very stressful for her to plan a charity walk while keeping up with her full time job. But she pulled it off and I’m proud to work with her. Good job, Kate!

Thanks for organizing the event, Kate!

Now, onto that product promotion I mentioned in the title of the post. I don’t do this very often so I feel that I’m allowed to include it now!

First off, my fabulous and talented mother Shirley Horn has decided (after much badgering from me) to launch her own online store, called Precious Survivors. What is she selling? Well, that is a good question! CUSTOM DRAIN POCKETS AND MASTECTOMY PILLOWS AND HAND-PAINTED ORNAMENTS! (Gee, that sounds swell!) Inspired by Trisha’s mastectomy and her hunt for a mastectomy bra, Mom created some adorable drain pockets. They have velcro attachments to connect to a mastectomy bra, and they are so colorful and cheerful. And they’re only $6 a pair!

Mastectomy pit pillows made by Shirley Horn

She is also selling handmade post-surgical “pit pillows”, heart-shaped pillows to rest under your arms after a mastectomy. My friend Kim gave me a pit pillow for my mastectomy, and it was perfect; it wasn’t too hard or too soft and my arm rested in the crevice without any pain. The pit pillows currently listed are Hello Kitty print, but Mom will take custom orders for a different fabric.

A portion of all of the sales from Precious Survivors goes towards breast cancer programs, such as the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. Dragon boat racing is a great way for breast cancer survivors to prevent lymphedema, which can be caused by lymph node removal.

If you’re looking for a gift to give a loved one who is about to have a mastectomy, check out the Precious Survivors storefront. Mom created these products based on both of our experiences with mastectomies, so they are definitely patient-approved!

Now onto the other promotion. A few weeks ago I received a lovely email from a woman named Ann Victor, the president of PerfectCami, a fashion company. Recently Ann has designed a line of camisoles aimed at the post-mastectomy crowd. She graciously sent me a few to try out, and I LOVE them.

The camis attach to your bra straps and therefore stay in place when you bend over. I am always worried about people seeing the inserts on my left side; the camis prevent any accidental insert flashing! They also work nicely to cover bra cups and straps. The bras I wore before my mastectomy were underwire and the cups did not extend high up on my chest; the soft bras I use now have more fabric, so it’s difficult to wear any relatively low-cut shirts or dresses without the bra peeking through. The camis hide the bra perfectly.

If you’re interested in ordering any of the camis, visit the PerfectCami website. They come in a variety of colors and styles (I’ve got red lace, black lace, white striped, black striped, leopard and a few more!) and five sizes.

OK, signing off now. I have to get ready for my trip to Vegas this weekend! Have a great weekend everyone.

Okay, so it’s not my first fill ever–I’m already up to 550 ccs on my right side–but it’s my first fill after losing my left expander to an awful cellulitis infection! I’m just feeling grateful that my reconstruction process is finally underway again.

Last Friday at work we had a “Think Pink” party to raise money for Making Strides Against Breast Cancer, a 5K walk in Santa Monica this weekend. We have a Demand Media team for the event! Needless to say, I’m pretty proud of my company.

The Think Pink party was a great success. There were pink ribbon cupcakes, bottles of rosé wine, pink cookies, raffle tickets and more, each for a $1 donation. We raised over $600 in just an hour.

The coworker who organized the event asked me to share a bit of my story, as a way to remind people that no community or person is immune to breast cancer. I am obviously very open about my BRCA mutation and my mastectomy, so I was happy to speak. The strangest part was revealing my age to my coworkers! If they didn’t already think I was a baby, now they know for sure.

Reflecting on the last year as I told my story was a great reminder to myself about why I made the decision to have a prophylactic mastectomy. I talked about my BRCA mutation, my mother’s cancer diagnosis, my mastectomy, my infection…and then I remembered what my brother said about the choice between “something fatal” and “something fucked up.” I quoted him, and everyone laughed, but it’s such an accurate description.

I closed my spiel by saying that hopefully in the future, the money raised for breast cancer research will make it possible for women my age to not be faced with such drastic choices. Hopefully there will be another option out there.

I didn’t have another option, but I am still grateful that I had some kind of choice. Because even though the last few months have been very trying–especially with the infection–they have been cancer-free. They have been on MY terms. And I am so very fortunate for that.

My amazing coworker Kate organized the party and is also an organizer for the entire walk.

The Making Strides Against Breast Cancer walk is on Sunday, and I’ll be speaking again at that event. I’m very excited to participate, especially since it’s been more than two years since my last charity walk!

When I found out Demand Media was participating in the event, I was ecstatic. It gives me a very warm feeling to work at a company that backs this important cause. My coworkers have been so supportive of my entire situation.

It’s crucial to be a part of an understanding community. I am realizing that more and more. On Monday evening, my mom and I had dinner with Trisha and her mom Linda. Linda flew out from Texas for Trisha’s surgery (which is TODAY–will get to that soon!) Chatting with them over dinner was relieving and comforting. We were able to connect and speak honestly without any judgment. I am so thankful to have them in my life!

I am also happy to be a member of a blossoming web community of BRCA-positive individuals and young women who are taking their health into their own hands. Being able to post random questions (about surgery, mastectomy bras, drains, scars–anything!) and get fast and honest responses is priceless. Social networking is a miracle! If any of my blogger friends are interested in joining these Facebook groups, please send me an email (rachel@tickingtimebombsblog.com) and I’ll add you.

Now, an update on Trisha: her prophylactic mastectomy was today at noon! I haven’t heard from her mom yet, but I’m assuming that no news is good news and that everything is going well. On Sunday I visited her at the Mansion and we spent the afternoon by the pool. I wore my mom’s new kick-ass pink one-piece bathing suit. (Side note: I’m pretty sure I am the only person in history who has ever worn a one-piece at the Playboy Mansion.)

Trisha has such a positive attitude towards her mastectomy. She introduced me to quite a few people at the Mansion on Sunday, and told all of them that I’d already had a mastectomy. That seemed to relieve them a bit; she is well-loved, so people worry about her. In a way, I’m visual proof that a woman can still have a very full and active life after a mastectomy.

Here’s Hef and all of the girls at Sunday Funday. Hef and I matched! He has good taste.

Hopefully I’ll get to visit Trisha in the hospital. I’ll try to at least post an update about her surgery and recovery, so check back for that!

UPDATE: I talked to Trisha on the phone for a few minutes around 7:15 pm! Besides sounding very groggy, she seems to be doing well. When I talked to her, she had been out of surgery about an hour and a half.

It’s been one week since my tissue expander placement surgery, and I feel great! I went back to work today and spent a long day (9 am-7 pm) in the office, sans pain medicine.

I’ll recap what last week was like:

After my parents and Trisha left on Monday, I did a bit of reading and then decided to go to bed. Sleep, however, did not come very smoothly. The pain pump that had earlier been my best friend turned against me by making me itch. It wasn’t the same awful head itching I felt when my Vancomycin IV started in April. It was more of a general body itching, but enough to wake me up every twenty minutes or so.

The nurse gave me Benadryl but that didn’t seem to help, so around 3 am we made the decision to switch from my pain pump meds (not sure what these were) to the painkiller Percocet. I was finally able to fall asleep for a few hours around 4 am.

By 6:30 am, Mom was in my room. Unlike at Ronald Reagan Hospital where discharge is 11 am, the Outpatient Surgery Center discharge for the special overnighters like me is very early (at 6:37 am! That’s a joke for Mom). And sure enough, Dr. Festekjian was in the room by 7 am, ready to kick me out.

He gave me instructions for the week, such as when to take my antibiotics and when I was okay to shower. He also cut off my stylish ace bandage bandeau bra and took out my PICC line. And he even agreed to pose for a photo, since he’s a blog celebrity and all.

Even early in the morning, Dr. Festekjian looks dapper…unlike me.

I spent most of Tuesday sleeping since I got little sleep the night before. Bryce did come over and we lounged around watching movies. On Wednesday evening my friend Kim visited after she got off work. We had dinner and went on a walk. I started switching from Percocet to regular Tylenol on Wednesday.

On Thursday I worked from home. Luckily my manager Jerri is very understanding of this strange and often complicated medical situation, so she helped me create a work project that would be doable from home: scrapbooking.

That’s right, I was paid to scrapbook. I work as an Associate Editor at eHow.com, and one of our new products is called Spark. It’s sort of like a bulletin board for the web; you can clip photos and text from around the Internet onto one space. My Spark boards give instructions for creating scrapbook pages in a more visual format. You can see one I finished, How to Create Graduation Scrapbook Pages.

I also took a shower on Thursday. Aw, the first shower after surgery—pure bliss. I could have showered on Wednesday, but my PICC line bruise made me nervous, so I waited an extra day to be safe.

The bruise is horrendous. It looks like I was punched in the arm by someone very large and very angry. When I had a PICC line on my right arm in April, the bruising was minimal. When I first took a good look at this bruise, it really did freak me out. But I consulted Drs. Horn and Horn and they assured me that it was perfectly normal. And sure enough, the bruise has gone down.

Yes, I took that picture today, and yes, it does still look awful after a week. But you should see the other guy!

On Friday morning, Mom and I hopped in the car and drove up to Los Angeles to the Playboy Mansion to pick up Trisha to go shopping. This, however, was no ordinary shopping trip: we were in search of mastectomy bras and cotton breast forms! After giving Mom a quick tour of the Mansion, we headed to Miss Stevens, a lingerie store.

Mom was definitely a fan of Mr. Hefner’s digs.

Miss Stevens is a store known for its wide array of undergarments to fit unusual sizes and needs. My mom bought her mastectomy bras there and the one that I eventually wore, so no doubt the ladies there are well-versed in mastectomies. However it still felt surreal for Trisha and I to walk in–two young girls in their twenties–and ask for mastectomy bras and breast forms.

The lady at the counter did not miss a beat, and immediately shooed me to a fitting room. I further explained my situation to her, and finally unbuttoned my shirt to show the differences in size. The exact current measurements are 250 ccs of saline in the left tissue expander, 550 ccs of saline in the right tissue expander.

She presented me with various options, ranging from adjustable silicone forms to small bra cup inserts. The silicone forms are always nice, but man! were they expensive. The one she showed me was at least $250! I love myself and I want to look my best, but I am not going to spend that much money just to be even-chested for a month.

I opted for two cup-like inserts. Layered one on top of the other, they give enough shape to match the 550 ccs on the right. Once I am filled up a bit more, I will only need one of the inserts. And then soon (hopefully by mid September) I’ll be even on both sides!

The inserts ended up totaling only $12; pretty good compared to the silicone option. Trisha graciously paid for my inserts as a “thank you” for taking her shopping. Her search for a mastectomy bra was a bit more difficult.

Since she has such a small frame, even the smallest sizes of the mastectomy bras would end up being too big for her after her mastectomy. Sure she could pin them to keep them tight, but that would require constant adjusting…not fun or practical!

After much debate, she ended up buying a mastectomy bra that also works as a compression bra. I think it’s Amoena #2161. My mom used the same kind after her implant exchange surgery, and I have used it too, though it can be a bit itchy so I prefer my softer mastectomy bra. But it opens in front and the stretchy fabric will stay tight on Trisha; plus it has Velcro at the bottom for drain pockets to attach.

Of course it doesn’t actually come with drain pockets, which is so bizarre to me. Drain pockets are probably the cheapest thing to manufacture; they are just little scraps of fabric with Velcro on one side! But for whatever reason, many mastectomy bras don’t actually come with them. Luckily my mother the seamstress has some ideas in mind for Trisha’s drain pockets!

On Saturday morning I drove for the first time, up to the bagel store. Later in the evening I drove all the way to Bryce’s house, which is about an hour away. I definitely favor my right side when I drive so I didn’t feel much strain.

The pain meds finally caught up to me yesterday morning. I’d been mostly taking Tylenol for pain, but sometimes at night I did take a Percocet. I ended up having a splitting headache that started around 10:30 am. I rarely get headaches that are more than just a dull pain, so this one really took me by surprise. I called Mom, almost in tears, and she told me to try to sleep it off in a dark room with a cold compress on my head. The headache was gone by 1 pm (thanks Mom!) and I am officially OFF of Percocet because that was just too painful.

It’s funny how pain medication can sometimes cause more problems than the actual pain is worth.

Today I scheduled my post-op appointment with Dr. Festekjian. I’ll be seeing him on Thursday at 3:45 pm. Hopefully he’ll give me the all-clear to start my tissue expander fills the following week!

I leave you with this picture of me this evening with the two cup inserts in: WHICH SIDE IS SMALLER THAN THE OTHER?! It’s an optical illusion oooooooohhhhoooooh! (OK cut the crap, Rachel.)

Hi, I'm Rachel, your average twentysomething. I'm in a sorority, I just graduated from college and started my first full-time job, and oh yeah, I recently had a double mastectomy! Welcome to my world of BRCA genes, plastic surgery, and snap-in-front bras.

Looking for gifts for mastectomy patients? Check out Precious Survivors for mastectomy pit pillows and other gifts. A portion of the proceeds benefits breast cancer previvor and survivor organizations.